The problems with the BMJ’s Wakefield-fraud story

Yesterday, the news broke that the British Medical Journal was running a series of stories that labeled Andrew Wakefield’s infamous 1998 Lancet study that posited a link between the MMR vaccine and autism an “elaborate fraud.” Dr. Fiona Godlee, the BMJ‘s editor-in-chief, compared the MMR scare to the Piltdown man hoax, in which a series of fossilized remains found near East Sussex, England were claimed to be a previously unrecognized early ancestor of humankind. (I’m hoping that has more resonance in the UK than it does in the US, because when I first read that I had absolutely no recollection of the whole Piltdown mess.)

As someone who has spent two years doing nothing but looking into various vaccine scares, I found the way these latest revelations, which were based on reporting by Brian Deer, were packaged to be problematic.

First off, if there is one reporter responsible for bringing the truth to light about Wakefield’s work, it’s Deer. He had the tenacity and spent the time and energy to do the digging that the rest of the media failed to do, and it was his articles, which first began appearing in 2004, that blew the lid off of this whole fiasco.

Unfortunately, Deer’s single-mindedness has become a sticking point that Wakefield and his allies have seized onto anytime new information is brought to light. When NBC did an hour-long special on Wakefield in the summer of 2009, Wakefield kept insisting that it was Deer, and Deer alone, who was pursuing him, as if Deer was some sort of deranged psycho bent on…well, who knows what. But bent on something.

And sure enough, that’s the angle that Wakefield is taking again: Last night, he was interviewed via Skype^ on Anderson Cooper’s CNN show (video is here, transcript here), and Wakefield’s talking points could pretty much be summed up as follows:

1. Brian Deer is a hit man hired to track me down and (metaphorically) kill me. (This is not an exaggeration: Wakefield actually said “He is a hit man. He’s been brought in to take me down.”

2. The world would know the truth if everyone only bought Wakefield’s book.*

Anyone who has been following the story closely knows that both of these are ridiculous points to make: Brian Deer is not a hit man and, as Anderson Cooper said to Wakefield on air, “But, sir, if you’re lying, then your book is also a lie. If your study is a lie, your book is a lie.” (Cooper also served up this smackdown: “Sir, I’m not here to let you pitch your book. I’m here to have you answer questions.”)

HOWEVER…most people have not been following the story closely. Most people just hear about it from their friends or in online chat rooms or at the playground — and then they see it on TV or read about in the news when the story flares up for one reason or another. And to some of those people, I’m sure this sounds like a he-said, he-said scenario, with Andrew Wakefield telling the world that Brian Deer is a deranged journo-assassin and Deer telling the world that Wakefield’s research was dishonest and can’t be trusted.

Another fallout from this is that it only reinforces the the conviction on the part of Wakefield’s allies that this is all a one-man crusade (although judging from the emails I’ve been getting, I’ve recently joined this crusade).

After Wakefield finished his Skypeterview with Cooper and CNN medical correspondent Dr. Sanjay Gupta, I appeared on CNN for a brief segment. (Wakefield actually refused to go on air with me.+) When Cooper asked me what I thought of Wakefield’s protestations, I tried to address what I found to be the problem with on-the-one-hand, on-the-other-hand reporting on issues about which there is only one-hand:

MNOOKIN: I find it — I find it upsetting and — and disturbing. He has framed this consistently as this one renegade journalist who’s out to get him. In fact, there was a British — the Medical Research Council, which licenses doctors in the U.K., spent two-and-a- half years looking into his work. It was the longest investigation they had ever done. And that was the group that stripped him of his right to practice medicine. …

They also found that there was — his evidence couldn’t be backed up. His data couldn’t be backed up. So, for it to be portrayed by–by–by Andy Wakefield as this being one person out to get him, you know, I think what he’s banking on is that people won’t actually look and see — look and see what the reality of the situation is. … And not only is there not peer-reviewed work [that supports Wakefield’s contentions], this is probably the most studied public health issue involving children over the last 20 years.

COOPER: Would public health officials have an interest in — in hiding a link, if there was?

MNOOKIN: Public health officials, I think, would have an interest in keeping children safe.

Even if there — if there was a link and it was discovered, I think public health officials would — would have an interest in doing whatever they could to protect children. This notion that everyone’s trying to — to — to cover their butts and — because they have already been — been perpetrating this scam, is — to distrust the motives of that many people around the world, you know, you would need to assume that — that everything going on is in some ways out to get you.

I think Sanjay’s point about our not knowing what causes autism is really in some ways the crucial one, because it’s so frightening to parents. The numbers are rising. And here’s something that you can point to. And because it occurs at the same time, you always get vaccinated when you’re a child, and autism is diagnosed when you’re a child, so it’s easy to understand why patients would latch on to that as a connection.

But it has no more validity than — than if I said microwave popcorn causes autism. The numbers have gone up since we have started eating microwave popcorn. There’s just — there’s absolutely no evidence supporting a link. …

If you took out everything that Brian Deer had ever written, there would be exhaustive evidence that — that this was not trustworthy. Dozens of researchers in dozens of countries have studied literally millions of children around the world. And this notion that there’s some sort of conspiracy between public health officials, doctors, journalists, drug companies, researchers around the world, you know, it — it would be the most brilliant conspiracy that had ever been hatched.

The other point I want to make — and I find this difficult to say — is that I think the BMJ was guilty of over-hyping their story in a way that ended up creating a misrepresentation of the story as a whole. By sending out breathless press releases and prepping the worldwide media for a series of bombshell stories,# the BMJ created the impression that this was fundamentally new news — and it wasn’t. We knew that Wakefield’s work wasn’t reliable or accurate on January 3 — and we still know that today. The stories that are currently running are not really all that different in tone or content than the stories that ran almost exactly a year ago, when a UK medical panel found there was sufficient evidence to justify stripping Wakefield of his right to practice medicine.

In fact, in some ways the way these new pieces have been presented actually confuses the issue unnecessarily. The lead in the main BMJ story quotes the father of the one of the initial 12 children in Wakefield’s 1998 study as saying that Wakefield misrepresented his son’s medical history. If there’s one thing we’ve learned from the past twenty years of vaccine scares, it’s that memory is immensely fallible — especially when it comes to emotionally charged situations. (At one point I had a whole chapter in my book about false memories…but, like about 200 hundred other pages, it ended up getting cut.) From the day it was published, one of the major problems with Wakefield’s original work that researchers pointed to was that it relied on parents’ post-facto recollections to determine what had or had not actually happened. Those memories weren’t a suitable substitution for actual data then…and they’re not now, either.

^ This did not help Wakefield’s case any: His face was covered in shadow and his movements looked jerky.

* The single oddest part of my work on The Panic Virus occurred when Wakefield asked me if I might be interested in translating his book into Hebrew. I still have no idea what he was possibly thinking.

+ I’m guessing he no longer is interested in my services as a translator.

# I tweeted about this after the BMJ’s press release was emailed to me and was worried that I had inadvertently broken the magazine’s embargo as a result. I emailed the BMJ’s press officer and she assured me it was all good. For a fascinating discussion of this, check out Ivan Oransky’s take on his blog, Embargo Watch.

[…] Seth Mnookin, who has spent two years looking into vaccine scares, has written an interesting post about the topic, including his view that BMJ over-hyped its story, which almost certainly helped drive media […]

There are hard lessons for many in this highly damaging saga. Firstly, for the coauthors… Although only two (John Walker-Smith and Simon Murch) were charged by the GMC, and only one, the paper’s senior author Walker-Smith, was found guilty of misconduct, they all failed in their duties as authors. The satisfaction of adding to one’s CV must never detract from the responsibility to ensure that one has been neither party to nor duped by a fraud. This means that coauthors will have to check the source data of studies more thoroughly than many do at present—or alternatively describe in a contributor’s statement precisely which bits of the source data they take responsibility for.

While accepting the wider point, this is a little awry as Dr Nick Chadwick took a very principled stand (scroll down) and after informing Andrew Wakefield of the errors in the PCR work, insisted that his name should be removed from “anything that was related to the PCR data because I wasn’t comfortable with the quality of the data”.

Mr. Mnookin, Thank you for your insightful view into this often confusing story. While I can certainly understand the points you make regarding the fact that this is NOT new news, I personally don’t see the harm in this particular media blitz. Many people, as you mention, “have not been following the story closely. Most people just hear about it from their friends or in online chat rooms or at the playground — and then they see it on TV or read about in the news when the story flares up for one reason or another.” I, as a concerned parent, believe that any opportunity to reinforce the fact that this research was fraudulant is critical in changing the opinions of those who aren’t well versed on the subject. I’m actually glad that the main stream media gave this story so much attention, as it is just another opportunity to get the message out that vaccines are NOT linked to autism. (Not to mention that I personally enjoyed the way in which Anderson Cooper addressed Wakefield.) Perhaps this seemingly overblown media coverage will alert people to the fact that they need to pay closer attention. Then they can simply start reading publications like the Panic Virus to help them understand the issues at hand. I look forward to reading it myself. Thanks again for all the work you put into it.

What we are seeing today is news but not science news. The
science on the Wakefield study was finished when study after study seeking
to replicate Wakefield’s findings came up short. The scientific method
requires that findings be replicable and Wakefield’s never were replicated, despite several
labs that set out specifically to do so. So in my mind, that answered the
scientific question.

What we are seeing today, though, has more value in terms of swaying public
opinion. I am hopeful that this is the last in a series of news/political
stories on this topic. First the Lancet retracted the paper. That made news.
Then the British Medical Council ruled that Wakefield’s conduct was
dishonest and irresponsible and stripped him of his medical license. Then
the Vaccine Court ruled in the Omnibus Autism Cases that there was no link
between MMR and autism, thimerosal and autism, or a combination of MMR and
thimerosal in causing autism. And now today we have BMJ calling Wakefield’s
work outright fraud. None of these were scientific events, but what they do
do is help families understand that when smart, impartial individuals (like you Seth!) look
at the science this is where they come out.

My hope is that after today’s events we will be able to put this behind us
and move forward with good science as our guide. But, the truth is that the
vaccine question will never go away completely until we can answer the
question of what DOES cause autism. It’s hard for some to accept what
doesn’t until we can tell them what does. That’s why it’s so critical, now
more than ever, that we fund good autism research and that’s what we do
at the Autism Science Foundation. http://www.autismsciencefoundation.org

On the one hand, the BMJ article and press release is much more sensationalist than we expect from a research journal. However, a big part of the problem with the vaccine-autism hypothesis discussions is that the scientists act like scientists and the parent-activists act like real people. Scientists have to say, “well, nothing is 100% certain” and regular people can say, “my kid is my science. I am 100% certain of what I saw”.

Some bad papers get withdrawn. Most don’t. They just float around either ignored or promoted beyond their value. Consider an argument made by Prof. DeSoto, who has published on the autism-thimerosal hypothesis. She counted the number of papers which “support” the hypothesis and the number that don’t. She came to the conclusion that since there are papers out there (regardless of how poor they are) the idea is not dead. By that reasoning, the idea will never be dead, because those papers will be forever in the public record. By that reasoning, the Bettleheim “refrigerator mother” hypothesis is still alive because there are papers in the public record which support it. Forget that they are old and have been superseded by later research, the public record would suggest the idea is still alive.

Mr. Wakefield will not back down from his stance that his research was ethical and his methods correct and conclusions sound. He will not voluntarily withdraw his other papers. They, or some subset, will likely remain in the public record. He and his supporters will use this to promote his idea to the press, who don’t have the time or resources to cross check. How many will take the time to read the GMC transcripts or the Omnibus transcripts? But, here is a document in a reputable journal which calls the research what it is: fraud. No mincing words with polite technical jargon but a simple statement: this work was fraud.

The value of the BMJ articles lies in giving people the evidence in one fairly brief, clear place that shows that Mr. Wakefield perpetrated fraud. The statements made in the article by Brian Deer have been cross checked by the BMJ editorial staff against the GMC transcripts. This gives people like Anderson Cooper the ability to cut off Mr. Wakefield with “if you were lying in your paper, you are lying in your book”.

Mr. Wakefield has spent 15 years preparing his story. He can certainly throw out misinformation fast enough to create doubt in an interview. People don’t have the time in a live interview to cross check his “facts”. For example, the idea that Mr. Wakefield’s results have been replicated in 5 countries (an assertion he made) is patently false. His references don’t support his claim. But who is going to call him on that in an interview unless they have spent a huge amount of time on this?

Mr. Wakefield deserves to be placed in the same category as flat-earthers, birthers, 9-11 truthers, creationists and others whose ideas have been tested and whose ideas are clearly false. They don’t deserve air time. They live on publicity and they use the press to sew doubt.

Considering this, I think CNN failed when they put J.B. Handley on air. They once again went for some false balance with “Parent still sees autism-vaccine link”. Of course J.B. Handley still sees a link. He’s as guilty as Mr. Wakefield in promoting pseudoscience. He and his organization have created some pseudo-science and promoted it to parents as “studies”. They host the Wakefield paper without the “retracted” stamp on it. The parallel to the Wakefield-MMR story is the thimerosal hypothesis. Mr. Handley took this idea and built an organization around it and promoted it and do-it-yourself medical “therapies”.

The time for false balance is long gone. Sure there are parents who still believe in Mr. Wakefield. There are parents who still believe in the thimerosal induced epidemic. It’s time for news organizations to accept the fact that both these ideas are wrong and that giving air time to false-balance is harmful.

Im sorry Mr Mnookin, but I taste sour grapes in this post of yours. Mr Deer is responsible for all of the information in the public domain about Dr Wakefield’s malfeasance and he is clearly the right person to finish the job. It was him who fought to get a hearing of the General Medical Committee. Mothers of autistic children like me will be interested to see what new information you can bring to the table about this or whether you just want to offer opinions and criticize a man who has done so much to help us. I have never heard of you before and I wonder what you have discovered, or whether you are just another person who sees us as people to sell something to. I have also looked at Mr Deer’s article and he does not just take the fathers opinion. He actually relies on a medical record and says so.

Actually, Tina, it was Wakefield who fought to get a hearing from the GMC. It’s really quite ironic.

And, Sullivan — the Bettleheim refrigerator mother hypothesis really isn’t dead. The reason for this has nothing to do with there being papers on the record… it has to do with people (and institutions) which actively promote it, even today.

It is hard for me to specifically contest what Brian Deer says in his latest article because I don’t have access to the medical records he claims to draw upon. (BTW, it is a mystery how he is able to access these confidential medical records, and what legal right he has to access them.) But my view of Brian Deer is quite skeptical, because I have often heard him make nonsensical statements which appear to be either lies or delusional, for example in this video:http://www.viddler.com/explore/ziggy/videos/1/

In the above video, parents of the “Lancet 12” express their support of Wakefield, Walker-Smith, and Murch. They describe their children’s severe bowel issues, and the difficulty they had obtaining treatment until they were referred to the Royal Free hospital — not for the purpose of litigation but because their children were suffering from serious health conditions. They say that many of these children found some relief from pain and discomfort for the first time because of the treatments provided by these doctors at the Royal Free. They say that they approved the treatments and diagnostic procedures and that their children did not experience problems with these procedures.

For some reason, the Lancet paper is often blown way out of proportion. It was a simple case series paper evaluating the gastrointestinal conditions of 12 patients. It mentioned that most of the parents reported that their children’s GI issues and autism had begun soon after receiving the MMR. The paper called for more investigation, but also said that a link between MMR and autism was not proven. This paper would not have had “legs” were it not for the fact that so many other parents were also reporting vaccine reactions in their children resulting in GI problems and autism.

Another criticism one often hears about this paper is that it was a small group of children and there was no control group. Again, this was a case series study. It did not purport to determine the percentage of children with autism who have GI issues. It simply studied in depth a group of children with autism and bowel disease.

We need more of this kind of research. We need our mainstream medical and government agencies to study vaccine injured children to determine how to identify vaccine injury, why these adverse reactions occur, how to prevent them, and how to treat them. Epidemiology is not enough.

Dr. Wakefield’s study is not a problem. The problem is the escalating rate of autism, often accompanied by severe GI issues, and a vaccine program that is out of control.

We often hear that all the science is in and this topic is closed. But our government has never done a study comparing health outcomes in vaccinated and unvaccinated children (or animals). Vaccines are tested short term and not in combination. We have no studies of the long-term cumulative effects of so many vaccines, or of the number of vaccines which can be safely given simultaneously. I have written some about why the vaccine controversy continues here:http://www.ageofautism.com/2010/03/the-autism-vaccine-controversy-continues.html

Seth, I saw you interviewed on Anderson Cooper, and you seemed thoughtful and intelligent. If I didn’t know anything about the topic, I would have been swayed by what you said. It seemed sensible, and you are quite personable. But because I do know something about this, I disagreed with everything you said. You were skimming the surface, speaking platitudes. It’s so easy to say that the science has spoken, but it hasn’t. So easy to say the case is closed, but it isn’t. As you seem to have spent a lot of time researching this, it surprises me that your views are so simplistic.

You compared the belief that vaccines cause autism to believing that microwave popcorn causes autism. Yes, I know that correlation does not equal causation.

But thousands of parents have had similar experiences of their toddlers receiving a round of vaccines and reacting with fever, seizures, eczema, prolonged high pitched crying, followed by loss of language and social skills and eye contact, and development of self-stimming behaviors, often accompanied by diarrhea or constipation and/or food allergies. Basically, symptoms of the immune system run amuck, and too many similar stories to be just a coincidence.

Put these “anecdotal” reports together with the peer reviewed scientific studies showing immune system dysregulation among people with autism – higher rates of inflammation in the brain, auto-antibodies to the myelin basic protein coating nerve cells, imbalance between Th-1 and Th-2 cells, family history of auto-immune disorders (a susceptibility factor), and it sure makes you wonder what we are doing to our children when we give them 29 vaccines by the age of two – which is unprecedented in human history.

As far as conspiracy theories, it’s basically the “Semmelweis Reflex” – something so common that there is a name for it.

I know I don’t do this topic justice. I’m just a mom who reads. I have no scientific degrees. But I do want to say, although you may not believe anything I’m saying, be careful when you vaccinate your little one. My youngest daughter had a febrile seizure after receiving the MMR and varicela vaccines at the same time. Some of the accounts I have heard of vaccine injury occurred when children received multiple vaccines such as MMR + varicela + flu, or MMR + DTaP + polio. If you give the MMR, maybe best to give it by itself. And BTW, anxiety and insomnia can result from sensitivity to mercury – from vaccines, dental amalgams, tuna… Just something to think about. Some people detoxify mercury better than others, and there is an increasing amount of mercury in our environment.

It’s sad but true that the general public listens to personal narratives, and tunes out impersonal details. I thought Anderson did a pretty good job of framing the confrontation as medical-establishment-shocked-by-reporter’s-findings versus discredited-book-promoting-conspiracy-nut-liar.

Anderson or someone else at his level needs to take the next step and start interviewing parents of children who have been hurt or killed by measles, mumps and rubella (whooping cough) as a directly result of Wakefield’s “research,” as well as the doctors who treated them.

Henry, Dr. Wakefield and his colleagues never said anything at all about the vaccines for pertussis, and they never advised people to stop vaccinating.

Why is it that every time people bring up concerns about vaccines, the conversation immediately jumps to the topic of not vaccinating at all? It’s not a matter of all-or-nothing, not a choice between the entire schedule exactly as is or no vaccines.

Imagine if we talked about other medical treatments in that manner — if someone raised concerns about problems with heart surgery, for example, and were told, “Don’t even talk about that!! If you talk about that people will stop getting surgery and they’ll die!!”

As Dr. Bernadine Healy said, “”There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. First of all, I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show.”http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml

The problem is not that we shouldn’t talk about problems with vaccines. The problem is that vaccine onjuries are occurring and not being addressed with research, prevention, and treatment.

As for Anderson Cooper, his interview with Dr. Wakefield was terrible. He said Dr. Wakefield was there to answer questions, but he kept interrupting him — he wouldn’t even let him finish a sentence. AC was up on his high horse, full of himself, and not actually understanding the issues.

[…] The problems with the BMJ’s Wakefield-fraud story When Cooper asked me what I thought of Wakefield’s protestations, I tried to address what I found to be the problem with on-the-one-hand, on-the-other-hand reporting on issues about which there is only one-hand: (tags: health balance examples) […]